Has anyone out there had a parathyroid problem?
Posted , 46 users are following.
I have had a raised parathyroid hormone blood result recently also a raised calcium in the blood result. I had raised calcium levels several years ago but after a scan of my parathyroid glands which showed no growths it was put down to lack of Vitamin D and called secondary parathyroidism
I was told to increase my Vitamin D levels which I did and my calcium level dropped. I have continued on the supplementation. I have severe sleep problems, am tired and grumpy, my hypothyroidism been under control for the last 8 years. I am border line diabetic. Almost 73 years old. Any suggestions welcome
2 likes, 143 replies
nancy19455
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I was tired all of the time, had lots of pain in my bones, somewhat grumpy, and I was losing hair. I just had the surgery in November 2013. It took me quite a while to feel less weak. I think it takes a while for your body to get used to the reduced calcium level. I am feeling much better now. More energy, less pain, less hair loss, and just an overall feeling that life is better. I have read that if your Calcium level is elevated and you don't have kidney disease, you definitely have Parathyroid disease. I am 60 years old.
gaynor76067 nancy19455
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kate29836 gaynor76067
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Fluffy43 kate29836
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You said that they did not find your parathyroid glands what hapened next?
As I have just had my op -quite challenging! and they removed one small one and the thymus gland yet these are not causing it.
They think there is a rouge one somewhere as my PTH hormone is still reading 25= so the hunt is on- not looking forward to that! and still left with the problem!
Did they cure you?
alan65290 Fluffy43
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Best Wishes
Alan
Fluffy43 alan65290
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Thanks for Posting.
Im in the UK - it was one of the Oxford university hosptials - nice friendly, professional people, with a lot of expereince of Parathyroidectomies.
Whilst my partner and I asked for such testing (after reading your comments and those from another site) and the surgeon agreed that its a good idea - ala the American way of doing things? - as far as I could tell, the lab couldnt turn round results that quickly. So I was tested just before the Op, then straight away afterwards - which was the next best thing?
The high PTH at '25' indicated that the tumourous parathyroid hadnt been found (also increased Calcium count)? The surgeon removed one, ever so slightly enlarged, parathyroid, as a matter of course, yet he said that the increase in size was marginal, yet didnt want to risk leaving it in (as my scans had been inconclusive apart from a 'shadow') and then having to open me up again. They also removed the Thymus as that could have parathyroid cells withn - although before doing so the surgeon palpated the area, as did his understudy and they couldnt feel anything untoward within - but again didnt want to take the risk. I am awaiting the lab results for the Thymus. Yet the removal of the Thymus may have meant that they did have an interim PTH test during the Op? everything was a bit of a blur afterwards as I had more GA than most due to a longer Op.
I shall be finding out more over the next week or two.
The problem - so it would seem - with modern scans, is that the computer/programme cannot easily differentiate if one or two cells are slightly enlarged. I am not sure if the scans are better in eg. the US or not. It seems as though the computer/programme gets 'confussed' when two or more parathyroids are slightly enlarged (for whatever reason).
Whilst I can understand that this condition may run in families and is perhaps more common in women, I am also wondering if it could be casused by a trigger, such as a virus. Yet viral damage could then cause HYPO-parathyroidism and NOT Hyperparathyroidism?
Circling back, it seems to me that in the US and elsewhere, that the labs are much faster at testing? I cant prove such, yet anecdotally that appears to be the case in the UK.
Also my counts were 'up' possibly due to the trauma of the Op and the Thymus being removed. I guess that it has to be remembered that I have had CFS for many, many years and my 'reserves' are low - not to mention the hyperparathyroidism (which seems more recent?) etc.
I live in the hope of spontaneous healing - yet in the meantime more tests and another Op. loom? If there is another parathyroid it is 'hiding',
Kindest to all, regards,
Fluffy.
alan65290 Fluffy43
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Thanks for the info. I believe that Dr Norman's clinic in Florida can carry out intra-operative PTH measurements because they give a setamibi injection (and scan) an hour before the operation. This allows them to measure the PTH level during the operation by monitoring radio emmissions from the parathyroid glands that have taken up the radioactive sestamibi material. But don't take my word for it - have a look at Dr Norman's website.
If you have CFS you will find that GPs in the UK will refer you to a study carried out for the Department of Work and Pensions which states that it is a mental problem. There is much criticism of this study. In fact if you refer to an article in the New Scientist (4/7/2015??) it does seem that a medicine holds out a cure for this disease contrary to what the £4M study concluded.
Best Wishes
Alan
Fluffy43 alan65290
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Thanks - as I am under the NHS, I guess that the Dr. Norman version is the rolls-royce of best practise as its paid for by private medical care in the US?
Re CFS/ME/FMS, the latest papers indicate that these condition matches, type for type and sub-type for sub-type, MS. So perhaps a common viral cause, but more than likely a myriad of 'triggers'.
The W.H.O long ago identified that ME & FMS as more than just a mental health problem, although 'fatigue' can be catagorised as; Physical, Emotional, Mental and Spiritual (the latter doesnt just refer to spiritual/religious beliefs but to, for example, working indoors a lot without access to greenery/walks/nature etc.). The issue I have found with some GPs is that they believe that they are 'scientists' yet get stuck in the mud and dont bother to update their knowledge or indeed apply academic rigour and first principle thinking. The young GP who sent me for PTH/Calcium tests was on-the-ball, thank goodness.
With CFS/ME/FMS some have been cured, yet such a cure has only come about through a multifaceted and multidisciplne approach. With generalised chronic fatigue - perhaps at the lower end of the scale - the sufferer may be sufering, intially, from Maladpative Stress Syndrome, which again invloves the adrenals and the support thereof relative to modern lifestyles and stressors.
With many thanks and kind regards,
Fluffy.
Fluffy43
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rosemary84567 Fluffy43
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siobhan1978 rosemary84567
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rosemary84567 siobhan1978
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siobhan1978 rosemary84567
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anabelle15560 rosemary84567
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They will see you very quickly for an initial assessment and will monitor you (the consultant even phoned me directly to check).
Fluffy43 anabelle15560
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Fluffy43 anabelle15560
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anabelle15560 Fluffy43
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anabelle15560 Fluffy43
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Guest anabelle15560
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karole91362 anabelle15560
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Justme55 Fluffy43
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I too would advise reading dr Norman site it's expensive but not for what you get done snd how it's done you can watch a video of ir on u tube it was at risk or hyperparathyrioidism when I was at another docs but here I'm not just goes to show even though I have all the symtoms and the spikes in cacium oesteo etc so take a land advice and go to parathyroid. Com heaps of info and charts